April 24, 2012 mcfadyena

The Cupcake Girls episode May 2!

While organizing our unforgettable Once Upon a Cure Gala last September 24, 2011, we connected with The Cupcake Girls. While our partnership wasn’t part of the original plans, I cannot imagine our gala without their involvement. Through the process of filming ‘I’m Late, I’m Late!’, their upcoming episode, airing next Wednesday, May 2 on The W Network at 8pm ET/PT, our Once Upon a Cure organizers got to know Heather, Lori, all their crew, and we got to visit them in their stores and taste different types of cupcakes and icings. When we first began talking with The Cupcake Girls about participating in our gala, I had no idea of the amount of art and creativity that would go into not only their cupcakes, developed for our ‘Alice in Wonderland’ theme, but their episode as well. Lori, Heather, and everyone involved was fabulous with all of our team, and Trey as well. They were professional, thoughtful, compassionate and lots of fun (just picture your child in a cupcake store, able to taste test anything they want. Trey had a blast!).
This episode brings forth bittersweet feelings for me. Once Upon a Cure was an unforgettable event. I poured my heart and soul into that event. I put every ounce of everything I have, for Trey, into it. Hours and hours of sweat and tears, with the mother’s dream of finding a cure for her child’s progressive disease. And it was worth every effort. We had more celebrities attend and more media attention than any of our past events. Thanks to our spokeswoman, Amanda Tapping, and other celebrities who joined our cause, together they helped spread the word farther than I ever could have on my own. We also raised double that of any of our other events.
However, only weeks after the gala, Trey began his participation in a phase I clinical trial in North Carolina that puts the enzyme he is missing into his brain, once a month (since he was two years old, he has been getting the missing enzyme infused into his body once/week, but that treatment does not help the central nervous system). His participation involved a minimum of ten days/month at UNC for the first six monthes. There was no way I could have organized another event during this time. This coming month, May, begins a new extension phase of the trial which necessitates only 5 days/month in North Carolina. So, while I am indescribably thrilled with the effects of this drug on his brain (I’ve never had cancer, but it sounds comparable to being diagnosed with cancer and being given only a few monthes or years to live, only to find out some time later that the cancer is gone- it’s not exactly the same, but I was given only years with Trey, and now, that timeline has now been removed), I am also saddened to not be able to follow our first extraordinary Once Upon a Cure gala, with another.
In the next days and weeks I will be collaborating with some wonderful, motivated, and generous people regarding what’s next for the MPS II Fund and Once Upon a Cure. I’ll keep you posted!
In the mean time, I hope you can find some time to watch The Cupcake Girls’ ‘I’m Late! I’m Late!’ episode next Wednesday, May 2 at 8pm ET/PT, for a glimpse of what our Once Upon a Cure Gala was like. I’ll be watching it, with happiness and gratitude for all we accomplished. Thank you to everyone who was involved, and this week, especially to Lori, Heather and The Cupcake Girls!! To learn more about The Cupcake Girls, you can go to their website (http://www.wnetwork.com/cupcakegirls) or follow them on Twitter (@TheCupcakeGirls) and Facebook (http://www.facebook.com/thecupcakegirls).


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